live in Australia and I have Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)) with P17 deletion which doesn’t respond at all favourably to Chemotherapy. I was diagnosed just over two years ago and I am under one of the absolute best haemotologist in Australia who practices at the Peninsula Private Consulting Group.
After an exhaustive set of test I was fortunate to be accepted into cohort 3 of the BGB-3111-304 Global Clinical Trial.
There are 500 in the program of which 50 are in Asia Pacific which we are part of.
The two primary drugs that I am on are Zanubrutinib and Venetoclax as well as some secondary drugs to combat the side effects of the two main drugs.
Initially my lymphocytes shot up from 6 or 7 to over 80 as the Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)) was released into the bood stream and flushed out through my kidneys.
My glands went from about an inch and a half to the size of a pea.
At my last bone marrow biopsy there was no evidence of the P17 deletion and only tiny fragments of Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)).
Furthermore, about 2 months ago, a CT scan with a dye in it confirmed my glands have stabilised at the size of a pea.
The only side effect that I have is that I can get fatigued at short notice. I have found the a short rest followed active exercise reduces the fatigue considerably.
If the opportunity is there, I would recommend that you jump on the chance to be part of these Global Trials
Although I have a different type of blood cancer than yours I know that it is always interesting to hear about trials and treatment elsewhere - do keep us informed of any updates. I’m sure forum members will be interested to hear.
Great news about your treatment
Enjoy your Christmas Day in Australia I’m off to peel and prepare my vegetables
My understanding is the same trial that I am part of is also happening in the UK.
As a matter of interest, Venetoclax although manufactured in the US was a 30 year development by the Walter and Eliza Hall institute here in Melbourne. For every tablet sold, the Walter and Eliza Hall gets a royalty which funds further research.
If I was to fund the cost of the Global trail I am on it would cost me almost $AUD 300,000 a year.
Good Morning @JohnCP,
Thank you so very much for taking the time to update us on your current situation and really positive outcome of your trial.
It’s really great to hear that you are doing well and that your trial has been a huge success.
Such a wonderfully positive post on Christmas eve.
As part of our organisation we have a Clinical Trials Support Service team who can advice on such trials should anyone be interested in understanding more- Clinical trials | Blood Cancer UK.
Wishing you & your family a fabulous Christmas down under,
Lauran
Hi @JohnCP I am so glad that you have found us, I also have Chronic lymphocytic leukaemia (CLL).
I was diagnosed 19 yrs ago and I have always been on watch and wait (active monitoring) i am a very lucky girl.
Thanks for letting us know about the trial you are on.
What I can relate to is the fatigue which I manage on a daily basis.
Mine is brought on if I get stressed, with what personally stresses me, or I overdo it emotionally, physically or practically.
Sometimes I need to rest or have a nap and other times I find fresh air and appropriate exercise helps me, I am a great walker.
There is lots of information on the Blood Cancer UK website.
Look after yourself, please keep posting and a merry Christmas to you as well
The complication with my Chronic lymphocytic leukaemia (CLL) was the P17 deletion. This meant it didn’t sespond to chemotherapy. My haemotologist said at the time I had 6 months to a maximum of 2 years to live. Having said that she encouraged me to see if I would qualify for the global trial I am on. Well the rest is history. Two years on and I am in deep remission and freeling good. All I can say is praise the Lord.
It is my understanding that my Cronic Lymphystic Lukumia with P17 deletion is currently in deep remission. I have a series of blood tests and a CT Scan with a special dye in it on Monday to assess the state of my glands. They were previously the size of goollf balls and are now the size of a pea. I will then meet with the people running the Global Trials Program I am on that manage the medication I have been taking for that past 26 months and my haemotologist on Wednesday to confirm the results of the tests done on Monday.
Hopefully this will confirm that I am still in deep remission.
Hi @JohnCP, thank you for taking the time to share this with us. May I ask how you’re feeling? We appreciate that awaiting tests can be an anxiety-provoking time for many. We are thinking of you and wish you all the best for the upcoming tests. Please do feel free to let us know how these go for you.
My bloods and CT Scan results were all good. My bloods we all back in normal range and the CT Scan confirmed my glands were all normal size, my liver was normal size and my spleen was normal size as well. My haemotologist commented that she was confident I was good for another 8 years at least.
Under the Global Trials Program I have completed mt 2 years on venetoclax and will no longer be on venetoclax. Under the Global Trials Program, I will remain on zanubrutinib for the foreseeable future and have a regular CT Scan every 6 months and a bone marrow biopsy in 3 months time
It is 3 months wince I came off Venetoclax which I had been on for two years and I am still on Zanubrutinib. Importantly my bloods are now within normal range including my lymphocytes which are at the low end of normal.
I have had my flu shot an pneumonia shot and I will have my covid booster in early June.
So all good and next visit to my haemotologist is in 3 months.
According to my haemotologist, my success on the global trials program is frequently discussed on local forums in Australian as well as global discussion forums.
